KIM MA­HARAJ

If there was ever a par­ent that need­ed a vil­lage around them, it is the par­ent of a spe­cial needs child, and in this case, an autis­tic child. As com­pared to the in­ter­na­tion­al stan­dards, the so­cial sup­port and pub­lic health sys­tems in place for par­ents of autis­tic chil­dren in Trinidad and To­ba­go is se­vere­ly un­der par. The par­ent is usu­al­ly made to be the sole sup­port and care­giv­er of the child. This can take a huge toll in terms of the men­tal and emo­tion­al load.

Des­tig­ma­tiz­ing Autism

Our so­ci­ety has set up autism in a way where it is some­thing to be feared, re­ject­ed and treat­ed like a dis­ease or pathol­o­gized. The old and per­va­sive way of think­ing frames autis­tic be­hav­iours as deficits, and this is where the stig­ma sur­round­ing autism comes from. Here is the thing though, autism is just a part of neu­ro­di­ver­si­ty. Just like there are dif­fer­ent races, and abil­i­ties of peo­ple, there are dif­fer­ent ways your brain op­er­ates. Most peo­ple be­have in cer­tain ways that are con­sid­ered ‘nor­mal’ or neu­rotyp­i­cal. But some peo­ple be­have in un­com­mon or neu­ro­di­verse ways. Thank­ful­ly, with a lot more re­search and un­der­stand­ing, and more autis­tic peo­ple speak­ing up about their lived ex­pe­ri­ences, hope­ful­ly this way of think­ing will change to ac­cep­tance.

Negat­ing So­ci­etal Views

These par­ents un­for­tu­nate­ly face a so­ci­ety that holds ex­treme­ly neg­a­tive views about autism. They have to face fam­i­ly, friends and teach­ers who do not un­der­stand some of their child’s be­hav­iours. They have to be their child’s pro­tec­tors and ad­vo­cates, even while not un­der­stand­ing them­selves. They are all unique­ly dif­fer­ent. The jour­ney as a par­ent of an autis­tic child is a deeply per­son­al one and could be an ex­treme­ly iso­lat­ing one, be­cause of the so­cial stig­ma and lack of aware­ness.

The Chal­lenges Par­ents Face

There are nag­ging ques­tions that come in­to your mind when you ob­serve cer­tain be­hav­iours of your child. How do you ad­mit to your­self that some­thing might be ‘wrong’ with your child? Who can you speak to about it? This is the first stage... the not know­ing, the con­stant wor­ry and ques­tion­ing, the de­nial. The sec­ond stage is know­ing and the in­vis­i­ble grief. The let­ting go of what you thought your jour­ney as a par­ent would be. It is heavy, think­ing and know­ing that your child is not like oth­er neu­rotyp­i­cal chil­dren.

That load is even heav­ier than that of a typ­i­cal par­ent be­cause they are try­ing to help their chil­dren nav­i­gate a world that is not de­signed for them. A sim­ple ex­am­ple, in Trinidad and To­ba­go, with the lib­er­al use of fire­works and deaf­en­ing mu­sic sys­tems, it could be ut­ter pain for some autis­tic peo­ple. Noise is a huge trig­ger for over­stim­u­la­tion, and these par­ents must try to pre­pare their child for po­ten­tial loud nois­es. Then they must help calm and soothe the child if or when they are trig­gered by the sen­so­ry over­load. One thing a com­mu­ni­ty could do to help these par­ents is to utilise a sound­proof venue or lim­it the vol­ume and du­ra­tion of an event. Be­ing mind­ful and con­sid­er­ate of who is around you will al­ways help.

An­oth­er part of that load is the stress of try­ing to un­der­stand and man­age some­times dif­fi­cult or con­fus­ing be­hav­iours. One source of stress for these par­ents could be just try­ing to com­mu­ni­cate ef­fec­tive­ly with their child, as autism could af­fect typ­i­cal pat­terns of com­mu­ni­cat­ing. As a re­sult of not be­ing un­der­stood, the child could be­come more and more frus­trat­ed and ex­pe­ri­ence a melt­down. The par­ent be­comes hy­per­vig­i­lant, and con­stant­ly be alert and aware of minute ways their child tries to show them what they mean be­fore they dereg­u­late. It is very much likened to the new­born to tod­dler stage, where you are learn­ing your child's cues, learn­ing what it is they need at a cer­tain time, and cou­pled with pos­si­bly a lack of sleep, with con­stant wor­ry­ing and anx­i­ety. That is every day for some par­ents of autis­tic chil­dren.

What Sup­port Sys­tems Make a Dif­fer­ence

The first thing they need is a ro­bust sup­port sys­tem that is en­cour­ag­ing and non-judg­men­tal. Peo­ple who can let them vent about their anx­i­eties and con­cerns. Peo­ple who can cel­e­brate the beau­ti­ful and amaz­ing lit­tle vic­to­ries of their chil­dren. They need peo­ple who can part­ner with them on the jour­ney of par­ent­ing an autis­tic child. Par­ents would ben­e­fit from sup­port groups with oth­er autis­tic par­ents, as this could be one of their great­est re­sources. Com­mu­ni­ty sys­tems like schools, places of wor­ship or even malls could cre­ate a sen­so­ry play­room or qui­et room, with trained per­son­nel who could give the par­ent a much need­ed break.

Learn­ing to carve time out to do self-care and strength­en cop­ing skills, will help in the short and long term. When you are bet­ter able to stay calm in the face of a melt­down, you will be more able to reg­u­late both your stress and your child's stress. Us­ing mind­ful­ness breath­ing tech­niques will help to slow down the adren­a­line re­sponse and kick in your parasym­pa­thet­ic ner­vous sys­tem that en­ables you to re­lax and calm down. Prac­tic­ing it dur­ing a stress­ful day will help keep your stress lev­els down.

De­vot­ing time to things that make you feel bet­ter, do­ing cre­ative or phys­i­cal things will fur­ther help man­age your stress, and re­lease pent-up en­er­gy. Play­ing hand-eye co­or­di­na­tion games with your child, like throw­ing and catch­ing a ball, would help both of you in dif­fer­ent ways. It is al­so an ex­cel­lent way to cre­ate healthy at­tach­ment. These things will work for par­ents of both neu­rotyp­i­cal and neu­ro­di­verse chil­dren but will be es­pe­cial­ly help­ful for par­ents of autis­tic chil­dren. The good part is that you could al­so teach these strate­gies to your chil­dren, as learn­ing ef­fec­tive cop­ing skills will help them to live with­in a neu­rotyp­i­cal world.

Aware­ness is Key

Un­der­stand­ing that your child is “Gift­ed” and ac­cept­ing their neu­ro­di­ver­si­ty could be one of the best ways you could help your­self and your child. Teach­ing oth­ers and spread­ing aware­ness in your com­mu­ni­ty could have an even wider ben­e­fit in break­ing down the so­cial iso­la­tion and stig­ma and con­tribute to cre­at­ing a more ac­cept­ing world for your child.

The au­thor is a Li­censed Mas­ters of So­cial Work, who earned her Mas­ters of So­cial Work de­gree at Adel­phi Uni­ver­si­ty in New York. She grad­u­at­ed sum­ma cum laude in 2013. As a So­cial Work­er, part of her port­fo­lio in­cludes Par­ent Ed­u­ca­tion and Sup­port of chil­dren di­ag­nosed un­der the Autism Spec­trum Dis­or­ders. She has com­plet­ed post grad­u­ate cer­ti­fi­ca­tions by Har­vard Uni­ver­si­ty and con­fer­ences with Dr Bessel Van Der Kolk, such as Post Trau­mat­ic Stress and Re­lat­ed Dis­or­ders, and As­sess­ing, Treat­ing Self De­struc­tive Be­hav­iors, and Trau­ma, At­tach­ment and Neu­ro­science.